Charity Registration Number: 296313

Our 50th anniversary year is drawing to a close, and we have had three successful events.  We started in May with the family day at Tapnell Farm, and then in June held a conference at Cowes Yacht Haven attended by about 80 people.   The outcome of the conference is that the CCG has approved our members being referred by their GPs to the Chelsea and Westminster Hospital multidisciplinary clinic.  This Association will fund all travel costs.   A worthwhile legacy for our 50th year.  The final event of the year was our dinner at the Lakeside Hotel attended by 45 members and guests. We were pleased that Paul Maryon was able to attend, the last remaining original member from the year our Association was formed.  Storyboards were created marking each decade of our Association's activity, and these are reproduced below.  

Further pictures of the dinner will be uploaded soon.

We thank all those who have supported us in this important year and we look forward to future years supporting our members. Look on this website or our facebook page for information of events.


https://consultations.dh.gov.uk/flour/ef256a11/

Parliament have been consulting on whether flour should be fortified with folic acid which is proven to reduce neural tube defects.  Over 1400 people participated in the consultation, including our IW ASBAH members. The results will now be reviewed and a decision published shortly.  Watch out for news.


NHS Healthcare Travel Costs Scheme

Payment of travel costs will be made if a patient meets the NHS eligibility criteria of reimbursement and provides acceptable proof of qualifying benefits and any valid transport receipts. A patient will be reimbursed at the level of the cheapest reasonable method of transport.

Qualifying benefits are:

  • Income Support
  • Income based Job Seekers Allowance
  • Income related Employment Support Allowance
  • Working Tax Credit exemption card
  • Pension Credit Guaranteed Credit
  • Low income HC2/HC3 certificate

The Healthcare Travel Costs scheme provides for the reimbursement of travel costs to eligible patients when they attend for a hospital appointment. Acceptable proof is a letter awarding the benefit dated within a twelve month period of the appointment. Patients who wish to claim travel costs on the day of appointment must:

  • Bring proof of eligibility to their hospital appointment
  • Provide proof of any valid transport receipts – for example bus tickets. Complete a Fare Reimbursement Claim Form obtained from the cashiers office, main reception or department where they attend for the appointment
  • Ask the department they attend to confirm attendance on the fares reimbursement claim form with a department stamp
  • Payment claim forms which are duly completed will be processed by the Cashiers Office situated in the main entrance of St. Mary’s Hospital.

The opening hours are:

Monday to Friday 09.00 – 16.00 Telephone: 01983 534409 Email: cashiers@iow.nhs.uk

If you are unable to claim your transport costs in person you can claim by post using a form HC5 available from St. Mary’s Hospital Cashiers office or Job Centre Plus offices.  Claims must be made within 3 months of the travel date. Travel costs for people accompanying the patient can only be paid in the following circumstances:

  • Written confirmation from the Clinician/Doctor that the patient needs to be escorted
  • Where the appointment is for a child under 16

Travel costs are not reimbursed for people visiting patients in hospital. This includes parents visiting babies in neo-natal units. If the visitor receives one of the qualifying benefits they may be able to receive assistance from social funds on telephone number 0800 0327 952 or through the Job Centre Plus office.

For further details of the Healthcare Travel Costs Scheme please visit NHS Choices.  

Patients receiving radiotherapy may be eligible for reimbursement of travel costs. For further information please contact Patient Services which is located at the Main Entrance, St. Mary's Hospital or visit www.dh.gov.uk/publications (Healthcare Travel Costs Scheme). You can also contact your Cancer Nurse Specialist or speak to the Cancer Support Centre on 01983 524186 or 07582 296749.

 

We are very grateful to the WightAid Foundation who have sponsored our 50th anniversary family day out at Tapnell Farm on 19th May.  Their generous donation of £1,000 has enabled us to pay for all of the costs of travel, entrance and so on to make sure all of our families have the best experience to mark our 50th anniversary this year.

At our AGM on 1st March we confirmed the adoption of the following polices and constitution for IW ASBAH.

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https://hansard.parliament.uk/commons/2018-10-25/debates/F3D544D4-AAF9-4786-8F12-7FEBA6C6E6E2/FolicAcidFortification

This link takes you to the debate that took place in Parliament on 25 October 2018 about fortification of flour with folic acid. A consultation will take place early this year and you are encouraged to participate and share your views on this important subject. Please write to your MP, Bob Seely (bob.seely.mp@parliament.uk ) to share your views.

Our new 50th anniversary leaflet is here! Fresh from the printers and ready for our year of events to mark our 50th anniversary, the leaflet features three of our young members, Joey (on the front cover below) and inside, Miah and Oliver.  We will be distributing leaflets in coming weeks.  It explains what Spina Bifida and Hydrocephalus are, and how to make contact with us.  Our regular monthly advert in the County Press also gives contact details. If you know of someone who would benefit from our help, please get in touch.

https://www.theguardian.com/society/2018/oct/14/folic-acid-to-be-added-to-flour-in-effort-to-reduce-serious-birth-defects

We are pleased to share that both the Guardian and the Daily Telegraph are carrying stories indicating that the Government are going to approve the addition of folic acid to flour. The fortification campaign led by SHINE has been effective in showing the benefits of this and we await the final decision being announced. But it is looking good! Well done to all those who have supported this campaign, and we on the Isle of Wight are proud that we have been active in supporting it.

Our conference next year at Cowes Yacht haven needs sponsors! Do you know of any local businesses that would be interested in taking a stand on Tuesday 25th June? An opportunity to reach medical professionals! Contact Anne Axford on anneaxford@gmail.com


Another summer comes to an end - and what a summer it has been! Wonderful weather and some very successful events around the island, where we have been pleased to meet old friends and new.

We were at Wolverton Manor at the beginning of September with a tombola and we thank Sandra Revert and Donna Woodcock and their teams for being out and about across the island spreading the word about IW ASBAH.

Our committee meeting on September 21st talked about our plans for 2019 and our 50th anniversary. We are pleased to announce that there will be a family day at Tapnell Farm in May, a conference at Cowes Yacht Haven in June, and a dinner at the Lakeside Hotel in Wootton in September.  More information will follow about all of these events.

Look out for our little green advert in the County Press on the first Friday of each month. This has brought new members who didn't know we existed and we are pleased to be offering support to them.  Do spread the word that we are here to help.

If you know of an event where we could be represented, let us know.

And finally - a Christmas Party with Santa will be announced soon!


Vanessa Burden, Anne Axford and Gill Yaz at the Riverside Centre. Thanks to Vanessa for being our hostess for the day, and to Gill for coming down to the Island from SHINE'S HQ to spend time at Haylands Primary helping staff understand and manage a pupil with Hydrocephalus, and at the Riverside Centre to meet with individual members. If you didn't manage to meet with Gill and would like her contact details, let us know. She is always helpful and can make contact with GPs and other health professionals to mediate if need be.


http://blogs.ncvo.org.uk/2017/03/26/the-house-of-lords-report-on-charities-what-you-need-to-know/?_cldee=bmlnZWwuaGFydGxleUBpd2hvc3BpY2Uub3Jn&recipientid=contact-9f3160d321ece51181183863bb343bf8-c892bb3d6ffa49409a3940d1bdf6bb84&utm_source=ClickDimensions&utm_medium=email&utm_campaign=Stronger%20Charities%20report%20March%202017&esid=bde03eb7-9c11-e711-8160-3863bb34ed80&urlid=6


This link takes you to an important report from the House of Lords "Stronger Charities for a Stronger Society" - it's worth a read. It pays particular attention to small charities and the important role they play in our society. This is us!



Gill Yaz, Health Development Manager at SHINE, the national charity for Spina Bifida and Hydrocephalus,visited the Island in March and talked to members about a range of issues, including continence.  Individual members had time with Gill and found her knowledge and advice very helpful.  She will be back again, so get in touch if you have something you would like to talk to her about. 

We are here to support families and individuals on the Isle of Wight who have Spina Bifida and/or Hydrocephalus. If you know of someone who has these conditions, please do put them in touch with us. We are here to help in practical ways and can offer advice and support. 

http://www.iow.nhs.uk/our-services/acute-care-services/neurology.htm

A link to the neurology department at St Mary's hospital which may be useful for our members.

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"As a child I was encouraged by my parents to believe I could achieve anything, and that attitude has never left me.  I find it hard at times to think of myself as disabled, I just do things differently.   Spina bifida need not limit a child's opportunities to progress and excel in life."

Baroness Grey-Thompson DBE

 Download our leaflet for more information about us!      

Youtube video about Hydrocephalus produced by national charity SHINE: link:

http://www.youtube.com/watch?v=qUXiypYT1IQ


Isle of Wight Association for Spina Bifida and Hydrocephalus promotes a better life for people with disabilities!

We have been granted funding for a project to raise awareness on the Isle of Wight. This project is funded through the My Life a Full Life programme supported by the Isle of Wight Clinical Commissioning Group (CCG).

Here are ten volunteers who completed their training on last year and now support new families.



About Us

We are an independent charity which provides help and support for those with Spina Bifida and/or Hydrocephalus who live on the Isle of Wight and their families.  We aim to provide independence and integration in the community.

Contact us through the website or by emailing or phoning us.

Secretary: Freya Conway   - littleowl2013@gmail.com

                        07535 004502

Chairman: Anne Axford email: anneaxford@gmail.com



 

 

Members enjoying an evening's bowling at Ryde in November 2013

Join Us

Whether you are someone with Spina Bifida and/or Hydrocephalus, or a relative, we welcome you to our association.  For advice, support or socialising, new members are always welcome.  Get in touch!

Here is our Facebook page:  https://www.facebook.com/pages/Isle-of-Wight-Association-for-Spina-Bifida-and-Hydrocephalus/585664281508543